So what is Lupus anyway?
There are loads of sites that go into much better medical definitions than I can give. The best i’ve found to be http://www.mollysfund.org/ and http://www.lupus.org.uk/.
When I talk about Lupus I mean S.L.E rather than any of the other types. Lupus is an autoimmune disease which is essentially when your body decides that producing antibodies to fight infections and viruses just isn’t enough to do and it produces self attacking antibodies. It belongs to a group of autoimmune connective tissue disorders, technically I have an ‘undifferentiated or mixed connective tissue disease with lupus variation’. But that just sounds ridiculous, so Lupus it is.
These antibody traitors wreak havoc throughout the body, attacking what ever they fancy on any particular day…or so it feels.
The most common symptoms of lupus are extreme fatigue (if you’ve ever had to rest because you walked down the stairs, you’ll know), joint pain, rashes, kidney problems and sensitivity to sunlight. Most people have most of these. But Lupus which is apparently sometimes known as the ‘great imitator’ doesn’t discriminate and can pretty much work its way through every part of you.
If I start at the top and work my way down, lupus effects my:
Hair: when disease is active my hair falls out. I find this bit particularly distressing not having the thickest hair to start with.
Eyes: my eyes are sensitive to sunlight, i’ve been known to wear sunnies in the rain.
Face: a lot of people have the ‘butterfly rash’ across their nose and cheeks, I only have this occasionally and it tends to coincide with increase in pain. When i’m taking max dose of DMARDs this almost disappears completely.
Swollen lymph glands: my GP once tested me for a thyroid tumour as the lymph glands in my neck were so large. The glands in my neck are often really swollen and painful, it hurts when I yawn or turn my head. I wear a lot of scarves to stop my neck getting cold. The glands in my armpits and groin sometimes join in. Sometimes Drs talk about doing lymph gland biopsies, “just to be safe” which scares me just a bit!
Heart and Lungs: my diagnosis only finally came about because my resting heart rate became high for no obvious reason. I’ve had episodes of unexplained breathlessness and feeling faint for years. This is also a bit I find hard to cope with, you can’t pretend to be ok when you’re worrying you might pass out.
Circulatory: a long time ago out of nowhere I woke up feeling a bit crap, looked in the mirror to find my hips, knees and ankles were purple and dotted with red spots, this was my first and so far only episode of vasculitis, it was pretty dramatic . My fingers and toes sometimes turn white, this is Raynauds syndrome, it can be really problematic for some people, I get it when I swim in the sea, wear flip flops on cold grass or when the weather is cold. For me its just weird more than anything else. I frequently lose sensation in my right hand due to inflammed blood vessels.
Musculoskeletal: this is a big one for me and it has been the greatest of mimics. I’ve lost count how many physiotherapists, chiropractors, osteopaths i’ve seen to treat joint and muscle pain that doesn’t get better. Its also the most severe symptom I have, 2012 was the last time I didn’t have any musculoskeletal pain. My hands, shoulders and hips are the worst effected. I have arthritis in my right hip and right hand. My muscles twitch, ache and i’ve lost strength and muscle tone over the past few years due to being too tired to exercise. Nearly all my joints make pretty awesome/gruesome grinding and clicking noises. The horrible neuropathic pain falls into this category too, this happens when the disease is at its worst, the slightest touch of my children gently touching my back or shoulders feels like electric shocks. I used to say I couldn’t remember the last time I wasn’t in any pain, but now I can’t even imagine what no pain feels like.
Blood: high white cells and low red blood cells but rarely any inflammation markers, which still shocks me as I feel as though my joints are on fire most of the time. Years ago I used to be a regular blood donor, now I can’t which saddens me, I want to help.
Organs- Kidneys, gallbladder and liver: are all commonly affected by Lupus. I have my kidney function tested every 12 weeks, so far so good. I often have slightly quirky liver test results, and i’ve had gallbladder problems which so far seem to be largely resolved by diet.
The other stuff: Fevers, oh the crazy fevers where i’m at once covered in goosebumps, wrapped in a wealth of layers, only to be drenched in sweat, then back to shaking. Fevers come out of no where and disappear just as fast, I don’t know why, perhaps my body is feeling particularly rebellious that day. For about 9 months before the DMARDs (Hydroxycloroquine) kicked in I lost the ability to tell if I was hot or cold, which sounds absurd, but was similar to the feeling you have when you have the flu and are burning up and freezing cold, only this was every day.
And lastly: the tiredness, oh my goodness the tiredness deserves an entire page itself.
So thats my Lupus, its quite a pile of unpredictable rubbish.
But my wolf is much kinder to me than many others, I mostly only have a selection of these things going on per day, so I know I should be more grateful, but it’d be much simpler if it all went away.